Living Life on Pause – Experts by Experience
March 2016–a seemingly ordinary day, but I remember feeling that something wasn’t quite right. Throughout the day I’d been nursing a headache, with no sign of relief. That evening, standing in my kitchen, I felt an explosion of pain inside my skull. The feeling was indescribable! I realized I needed help as thoughts came slowly while I tried to relay my distress to my three young children. I tried to speak but could not think of the words, and my mind felt suspended between two worlds. I was convinced this was the end, and I was going to die with my children watching. But I was wrong – it was not the end, but the beginning of a two-year battle to determine the cause of these terrifying symptoms.
Despite being admitted to hospital and extensive testing, I was discharged with no diagnosis. Weeks passed as I waited for referrals to specialists. I wasn’t quite out of my thirties, and I spent my days confined to a recliner in my living room, physically weak and scared. There was no trace of the woman who used to enjoy swimming and hiking with family; my scalp burned for days at a time, and even a gentle hug from my children would leave me trembling with the sensation that my bones were breaking.
As the list of diagnoses and medications grew, so did my despair. While each specialist offered a piece of the puzzle, none could give me an answer to my most pressing question: “What is wrong with me?”
I spent a lot of time alone, thinking, during the seemingly endless wait between appointments. At first, grief trickled in and then became a deluge that threatened to drown me. Each time I thought I had accepted this new life, another diagnosis or medication would renew and restart the grieving process. What hurt most wasn’t the physical pain, but the lies my mind would tell me while I was steeped in misery. Days slipped by, and saw my future drifting away.
When doctors asked how I was, feeling, I’d reply, “Fine.” I didn’t tell them about missing the countless events that I used to attend without a second thought. I didn’t say that I felt incredible guilt and shame because I couldn’t force my body into compliance. I never spoke what was on my mind...and no one probed to find out.
2017–I had half a page of diagnoses, but still felt that something missing, and I decided to build a new care team. I sought recommendations from family and friends, combed through online reviews, scanned physician profiles. Finally, I selected a primary care physician who wrote that she enjoys “taking care of complex medical problems.” I felt an instant connection when we met for the first time in December 2017. It wasn’t her educational background or her thoroughness when she examined me, but her interest in me as a person and her willingness to include me in developing a treatment plan aligned with my goals, that made all the difference.
2018–Nearly six months into our relationship, the quality of my life improved greatly. While I’m not able to run a 5k race, I can walk to the top of my street. The number of migraine days dropped from an average of seventeen per month to six, and the overall pain days have decreased to nearly half the number they used to be. A psychologist helps me sort through the feelings surrounding my chronic illness, and I’ve developed a strong support network of friends and family. In April I was referred to a geneticist to explore the possibility of Ehlers Danlos Syndrome.
I may not have the life I had planned, yet as I write this, I feel a strong sense of hope – that I will soon have an answer to my question, “What is wrong with me?”
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Gabrielle “Rie” Lopez, holds a graduate degree in public health, with a specialty in health education and promotion. She is particularly interested in the intersection of chronic illness and mental health. After a health crisis, her experiences led her to start advocacy work in the chronic illness community. Rie is a health educator and serves as a patient advocate for mental health, chronic pain conditions, and clinical trials. You can find her on Twitter at @RieOfLetters or through her blog, Rising Inside the Embers.